Another good scan!

I am happy to report I had another PET scan on October 14th and the results were great!  The area in my sternum that has been showing signs of healing looked stable and no new areas of metastasis were found!  These scans are fairly anxiety-provoking for me.  As I’ve mentioned before, I have definitely had the rug swept out from under me in terms of bad news multiple times in the almost five years that I’ve been living with breast cancer and I think it will just take time for those hard times and bad memories to fade away and be replaced with the feelings of hope that a scan can be a positive reassurance in this disease.  Because I’m just not ready to face any more negative surprises (i.e. cancer has spread to liver, lungs, brain, etc. and more surgery, chemotherapy, and/or radiation would be needed), I tend to assume the worst going into these scans.  I also have noticed that I feel every ache and pain as scans get closer and worry that these are new spots of cancer popping up.  I am sure all of these feelings are fairly normal for cancer patients and I am confident that I will become more comfortable and aware of these feelings with each scan and hopefully become more hopeful with each good scan.

I am guessing my next scan will be sometime in mid-2020.  I am still assessing whether or not to stay with my new oncologist in my current clinic or try moving to the UW Hospital system, which is connected to my clinic, but bigger and much more inconvenient to get to.  Hopefully I won’t have any updates in terms of my health for a while.  I continue to tolerate the medications well and my appointments have decreased from monthly to once every two to three months.  I would say as a metastatic cancer patient, it doesn’t get much better than this.  I am starting to see a future again at least for the next five to ten years where I can see my kids get through middle school and possibly even graduate high school and for that I am so thankful.

The doctor-patient relationship and … Stranger Things?

Last month I found out that my oncologist was leaving his practice and moving to Florida.  This news, like so many other pieces of information I’ve received in his office, hit me like a ton of bricks.  To say I was happy with him is an understatement.  While I can say I was extremely satisfied with him during my initial years of cancer management, he became my lifeline once I found out the cancer had metastasized.  As supportive as my friends and family have been, he’s the one who gets it.  He’s the one who I can reasonably talk to about my treatments, without constant questioning, fear, judgment, explanations, and rationalizations.  For as much as I dread appointments and hate taking time out of my schedule to hang out at a cancer center, I liked seeing him.  That doesn’t mean I didn’t proactively try to avoid appointments, and probably will continue to do so to the extent that I can.  But he made it bearable.

Before I got cancer, if you would have asked me how important the right oncologist would be to me personally, I would have probably said not that important.  I don’t need a shoulder to cry on.  I’m not looking for some magical homeopathic remedy I can invest in.  I don’t need someone to “sell” me their skills as a practitioner.  All I seek is someone who knows the business, knows the latest published data, keeps abreast of the clinical trials, both finished and ongoing, and makes logical decisions within the current clinical guidelines.  Then I got diagnosed with cancer and realized a good oncologist is so much more.  I don’t know how, but my oncologist can empathize like no other.  He always seems to have time, even though I’m sure he doesn’t.  I can’t tell you how many times I’ve sat in an appointment thinking… “this guy has got to get going…I’m just going to stick to my few bullet points and get him moving along” …. and then he’ll ask about my family.  He even gave me some unsolicited marriage advice when I told him I felt I was more irritable after a medication adjustment and he said “Yeah, that’s pretty common and many times the husband is on the receiving end of this”.  He was probably more right than I’d like to admit and I made a mental note to ease up on Travis (whether Travis thinks that helped is another story).  I think the hallmark of a good oncologist is the ability to listen and work with the patient as a partner in treatment.  Obviously, my opinion is that my oncologist is a good listener, but I would also hear comments about his bedside manner out in the community.  I began to realize that somehow I got really lucky that I got in with this guy.  And as terrible as news of metastatic breast cancer is and was, I felt I had a really good team.  I liked our plan.  I liked the radiation oncologist he set me up with.  I was hopeful.

I am set up with a different oncologist that I will meet with in a few months.  Fortunately, I’m in a remission/steady state/maintenance period with my cancer and medications, so I guess it’s a good time for change if there has to be one, but I will miss Dr. Hei.  One time he was commenting on my low pulse and took his own pulse, which was apparently much higher and joked “It’s because I’m always around this place”.  I’ve always thought being an oncologist would be such a depressing job, but he made it light-hearted while still showing concern and giving attention to the disease.

On another note, a new season of my favorite TV series has just come up on Netflix, Stranger Things.  If you ever want a visual representation of cancer, that show is it.  The creatures just keep coming back and just like the mutated, cancerous cells in my body, they are eerily similar to their “normal” counterparts, but crazier, more dangerous.  And they just don’t die.  You think they’re gone, but they’re smart and survive very well.  It’s amazing to me how indestructible cancer cells can become.  Sometimes I feel like I have my own science fiction drama unfolding in my body.

 

Living with Cancer

Like most homeowners, we periodically find ourselves needing to fix and replace various fixtures and appliances around the house.  Over the past year the fan and overhead light in our bedroom have become possessed.  While there is one button for the light and one for the fan, they do not work together.  If you’re trying to turn on or off both the light and fan at the same time, not only will both of them fail to respond, but this will cause one or both of the fixtures to become temporarily disabled for an unspecified amount of time.  Last year, in an effort to trouble shoot and fix this problem, my husband, Travis, disassembled the whole apparatus.  He didn’t discover anything amiss and re-assembled the whole thing without really fixing anything.  This process was apparently enough to cause a temporary “fix” in the system for the rest of the summer.  Now that the warm weather has returned, we’ve been wanting the services of a ceiling fan again and it has become apparent that it is back to its old ways.

One really nice thing about Travis as a husband and roommate (and probably co-worker) is that he is not only handy around the house, but he aggressively fixes problems.  I would probably say he is in the top 1% of spouses in this category.  He decided he needed to fix this problem right away and a new fan/light fixture was needed to take care of this once and for all.  He immediately began his search for a new fan.

On a side note, one interesting thing I have learned from being married to a do-it-yourselfer is that when installing your own light fixtures, faucets, doors, appliances, etc. there are generally only a few styles or selections that will work for your house.  I feel like it is deceiving when you enter a lighting, plumbing, tile, or home design store to see all of these fancy options, when in fact only two or three options are even a possibility without spending thousands of dollars re-wiring or moving things around.  When we initially replaced the 1980’s era ceiling fans in our bedrooms ten years ago, Travis gave me three rather ugly choices to pick from.  Basically all the same simplistic style in three color options, white, light brown, and dark brown.  I just picked one and moved on because, another thing I’ve learned from being married to Fix-It Felix, just let him do his thing.  Sometimes it’s not worth the hassle.

Back to the most recent fan replacement.  This is where the cancer life makes it appearance.  It was bedtime and I was reading a book by my favorite comedian.  I happened to be reading the chapter where she was talking about the process of her mother dying from cancer and the last few weeks/days of care.  As a person in general, but especially a person with cancer, end-of-life care is important to me.  I want to be ready for it and more importantly, without depressing everyone around me, I want my family to be ready for it.  In the book, the comedian (who is obviously well-off and probably provided the best end-of-life care for her mom) stated that she briefly left her mother’s side and when she came back her mom was covered in vomit.  I began to ponder how much that would really bother someone in the midst of dying.  Do you realize you are covered in vomit?  I doubt it.  How much would it scar my husband and kids to find me in that situation?  Possibly quite a bit, but in the grand scheme of losing a loved one, maybe it doesn’t even matter.

In the middle of all of this pondering I was doing (all while falling in and out of sleep, because that’s how I read/fall asleep at night), I observed a soft light and footsteps trudging up the stairs and I sighed with annoyance as my husband started heading over to me with his laptop.  This was not a time to have a family discussion.  I was not only in the middle of falling asleep, but now I had the foggy thoughts of death in my mind. He wanted me to look at a fan.  Just like ten years ago, there were two ugly choices and both in silver/gray which goes against the whole “warm” color scheme he has going on in our house.  I didn’t even bother to look at the fans, but rather just snapped back “They’re the same fan!”  No, they were not the same fan, one was rounded, one was square.  Finally, I just said “Whatever, I don’t care!” and went back to the more important problems in my head at the moment (and for the next few hours).  I find myself thinking less and less about the cancer these days, but sometimes it’s just there and everything else in life becomes background noise.

Another Year, Another Scan

Last year at this time I was just beginning the long process of getting diagnosed with metastatic breast cancer.  Those were unpleasant times and memories that I just hate to relive.  The initial thinking that the persistent pain in my sternum might be cancer.  The mixture of anxiety, panic, denial, doubt, and frustration that I felt everyday for over a month while debating about how to handle the pain.  I knew what would happen as soon as I told my oncologist about the pain.   We would go down a path of scans and appointments and because I felt about 70% sure it was nothing, my main concern was actually finding time for the appointments.  I thought it would all be a waste of time.  And then when it wasn’t and the worst case scenario started playing out a whole new set of problems developed.  I just didn’t want to deal with it all over again.  And I was scared.  Scared that new problems would keep turning up.  Scared that I’d choose the wrong treatments.  Scared that I would yet again let down my family.  And mainly scared that I wouldn’t see my kids grow up.  I just had this vision of spending the rest of my life in and out of oncology clinics and hospitals.

Here I am a year later feeling pretty good and going in for another PET scan.  I’m always amused when I have PET scans because it’s a nuclear medicine scan.  The drugs I make are being used to produce the image of the cancer in my body.  I remember seeing patients prepping for PET scans at Ohio State where I did my authorized user training and never in a million years did I think I’d be one of them this soon.  The whole concept also seems over-simplistic to me.  Basically radioactive sugar is injected and because cancer cells love sugar (as every treat-cancer-naturally proponent loves to remind me) the radioactivity goes right to the cancer cells.  One key part of the PET scan is a rest period of 45 minutes in a dark room to calm your body so the radioactive sugar will really concentrate in the cancerous cells and not to muscles that would be needed to move, talk, or read.  Laying still in a dark room for 45 minutes and then knowing that you have to spend the next 40 minutes in a CT/PET scanner is not the most fun thing ever.  Thoughts that started going through my head:  Here I am again, getting a cancer scan, how did I end up here?  What happened to my life?  I wonder what this scan will show?  What would I even do for treatment if something did show up?  Does thinking use glucose?  Is my overthinking going to make it look like I have a brain tumor?  Shoot, I just looked at the clock again, will that cause my eyes to light up in the image?  Yeah, I’d like to say I had some deep spiritual conversation with God or used the time wisely to solve all of my life’s problems, but I basically just repeated these same thoughts over and over again for the entire waiting period and scan time.

I am happy to report everything looked great!  My oncologist told me that based on the scan there is no evidence of cancer in my body!  Overall I’ve been feeling healthy, so can’t say I was surprised, but you never know what a scan will reveal, so just having a good one is such a relief.  I really hope I can give this positive, annual report for the next few years at least and then who knows what new treatments might come along if something does come back?

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Monthly infusion of bone strengthening medication. Soon these infusions will become less frequent!

Last year at this time I spent the drive home from my oncologist sobbing and then continued sobbing in a rolled up ball on my bed.  This year I actually cried tears of joy driving home from the oncologist.  I feel like my life has been on hold and now I’ve got it back.  My treatments and appointments are even going to become less frequent, so pretty soon my monthly visits will turn into quarterly visits.  I know it’s too early to proclaim a Lance Armstrong-esk victory over cancer, but it feels good.  Another year down, another good scan in the books.  Overall I’m feeling pretty good and definitely feeling grateful that God has given me more time with the people I love.

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Celebratory movie and ice cream after good scans!

Working with Cancer

I honestly thought when I got diagnosed with the recurrence of breast cancer that I would quit work.  But just as I am not quitting life, I am not quitting work quite yet.  I am proud to say I am now going on almost a year working full time with metastatic breast cancer.  It has not been the easiest year and I have had a tremendous amount of help, but I did worry it would be much worse.  I really like my job.  I feel I do a good job and I feel I am making the world a better place through my work.  Work is really good for me psychologically and it would be more difficult to deal with the thought of having a terminal illness if I didn’t have the ups and downs of work to distract me.  Not to discount the time, effort, and money I have put into educating myself so I can enjoy a job that pays decently, but most days I feel fortunate to go to work.  The other bonus is that I work for a large company that provides me with vacation time and other benefits.  I do not take this for granted.  While no one enjoys working for “The Man” (whether that be a corporation, government, etc.) and playing the political game once in a while to get ahead or even keep your job, I know very well that if I were self-employed, this diagnosis would have been much more detrimental to my life.  Once in a while I’ll throw a pity-party for myself and at one point I found myself complaining to my husband that I felt I should get some type of extra time off for appointments (you might call this part of the political game, yes of course I qualify for sick time, but I can really only take it at the expense of my co-workers, and that can lead to other problems).  To this complaint, my hard-knocks, life-isn’t-fair, cynical husband quickly reminded me that I get six weeks of vacation time, which should be plenty for my appointments and he once worked with someone who went in for chemo over his lunch break because he had five kids and a wife to support, so I should just get over it.  Okay, fair enough, point taken.  Anyway, while I also assumed at one point that I must be the only person going through this hardship of working full time with metastatic breast cancer, of course I am not, there are plenty of people that continue to work.  After a year of going through the ups and downs of working with cancer and the constant internal struggle of how to best live what might be the last years of my life, I’ve come to the conclusion that working is better than dying, so I should just enjoy the fact that I’m well enough to work while I can.

One interesting element of my job is that I spend about 50% of the time working the “night shift”, from 1:00 a.m. to 8:00 a.m.  The night shift is actually the most critical shift in nuclear pharmacy due to the production schedule of radioactive drugs.  For me and most other nuclear pharmacists, it is the most enjoyable.  But it is the NIGHT SHIFT.  I don’t care who you are, the vast majority of us have a really hard time waking up at midnight to go to work.  It’s really difficult to hear that alarm go off at 12:30 a.m. and make myself get out of bed.  One “coping” mechanism I’ve always had was being able to tell myself that I won’t have to do this in retirement.  That’s out the window now…I think I’m in my retirement, and just working full time and raising young kids at the same time (I guess what many retirees are doing nowadays).  The other “coping” mechanism I have is that I sleep really well from 9:00 a.m. until 1:00 p.m., so I can generally just crash when I get home from work.  Appointments disrupt this.  I try my best to schedule around sleeping, but sometimes it’s unavoidable and that can make the whole week rough.

Now that I’ve had cancer for almost four years and experienced many of the treatments, I can reflect on how the treatments have affected my work.  I’ve preached this many times and will continue to do so, but every cancer is different and every person responds differently to treatment, so I always hesitate to put my experiences out there for comparison.  My treatments over the past four years have been a combination of surgery, chemotherapy, hormone therapy, and radiation.  Of these, the surgery was the only intervention that required me taking off work.  I took off two weeks post-mastectomy.  To be honest, I was extremely lucky and had really good healing, so probably did not even fully need the time off, but it was really nice to just have the surgeon make the decision beforehand and not question every day whether or not I should be working.  Hormone therapy was the other “easy” decision.  I haven’t needed to take any time off for that.  Chemotherapy and radiation were trickier to navigate in terms of how to balance treatments with work and life.  So far I have been completely blessed during my treatments in that I never felt too sick to work.  That being said, I will completely admit that balancing work during both chemotherapy and radiation was really tricky and there were definitely days when things just seemed to fall apart.

Three and a half years ago I underwent chemotherapy to help prevent a recurrence and fortunately I had a relatively easy chemotherapy regimen.  One question I’ve always wondered when I hear people are doing chemotherapy is “How sick are they?”.  I mean, are they just throwing up every hour or are they spending the whole day in bed?  There is a huge scale of “emetic potential” for chemotherapy drugs and they vary greatly.  Also, there are a lot of really good anti-nausea medications out there and depending on the regimen, the clinic will definitely give premeds like candy to prevent discomfort.  Like I said, my regimen was fairly easy.  For me, the chemotherapy experience was like the first trimester of pregnancy.  I never really felt great, but I could definitely work and function.   I chose to work the night shift for the two months of chemo so that I could easily go in on my treatment days without taking time off or disrupting the schedule in general.  As I’ve mentioned before, the night shift is not a piece of cake.  It was rough working the night shift for two straight months while going in for chemo and labs every few weeks.  Had I been in a terminal cancer situation at that point, I’m sure I wouldn’t have pushed through like I did, but at the time I was pretty confident the cancer was never coming back and I would never have to go through this again.  The only hiccup I can report with chemotherapy is that I developed an allergic reaction to one of the medications about six weeks into the regimen.  I developed hives, which are never fun, especially during the hot summer.  Then one night, before work, my face swelled up.  It was pretty bad, I wish I had taken photos.  At that point it was midnight, I needed to go to work and I was basically debating between going to work and going to the emergency room.  I would always tell anyone experiencing what seemed to be the beginning of an anaphylactic reaction to go immediately to the hospital, but this is not what I did.  I loaded myself up with Benadryl® and steroids (I had plenty on hand as part of my pre-chemo medication regimen) and drove to work.  At work I then put the technician I was working with in an uncomfortable position by appearing with a disfiguring swollen face and telling her she might need to call 9-1-1 at some point during our shift.  But the swelling went down, we changed my chemo regimen for the last treatment and life went on.

Radiation was easier than chemotherapy in many ways, it was just more of an annoyance.  I had radiation every day for five weeks, so basically I just got sick of going there.  But that clinic was close to my work and I was usually in and out in 20 minutes.  Radiation is different than chemotherapy because it isn’t usually a systemic thing, so while it can have dramatic side effects at the tissue being treated, it doesn’t really affect the rest of the body.  Since my radiation was targeted towards my sternum and throat area, I did have problems eating for a couple weeks since my throat was sore.  I was actually pretty miserable and really starting to run low on energy from not eating, but I quickly recovered and regained the ten pounds I had conveniently lost.

I am now in more of a maintenance situation with regards to treatments.  I do get an infusion once a month and take an oral medication which has some of the immunosuppressing effects of chemotherapy, but to a much less degree.  I still meet with my oncologist once every one or two months and have labs and scans periodically.  While I don’t enjoy spending my free time doing these things, it’s not bad and I’m sure many people have more intense work-life balance issues than I do.  At this point it’s a matter of making an intentional decision every day to go to work.  As much as I enjoy spending money, I really have no interest in making money anymore.  I have very little interest in possessions.  Can’t take them to Heaven, right?  I guess that’s the difficult part about going to work every day.  I do like working, but sometimes I’m definitely choosing making money over spending time with my family and that’s hard.  I always assumed my life wouldn’t be in day-to-day situation until I was in my 70s or 80s and by then I would have gotten to enjoy retirement for a decade or so.  But here I am, 39, not sure how long I’ll physically be able to work and wondering whether I’ll have the opportunity to enjoy some form of “retirement” without too much physical discomfort or conversely, whether I’ll throw in the towel too early and cause my own demise from boredom.  I’m currently reading the book “Big Game” by Mark Leibovich about the NFL.  So far the author has focused quite a bit on Tom Brady and how much longer he can keep playing.  When reading it I feel like I can relate to the struggle of a professional athlete to stay relevant with an aging body at a relatively young age.  The author brought up the idea that “things might end badly with Brady” with regard to his relationship with the Patriots and referenced Brett Favre’s retirement “That spectacle was tough to watch:  Favre’s agonizing, his retiring, the public tears and questioning of whether he was “guilty of retiring early”; the unretirement and the different teams”.  To this question, Tom Brady’s father replied “It will end badly…it does end badly.  It’s a cold business.  And for as much as you want it to be familial, it isn’t.”  Like football, my job is pretty black and white.  Either you do the job and earn your paycheck or you don’t and I feel like the transition of discontinuing work is rarely easy for anyone.  So there it is…as much as I’d like to say I’m succeeding in feeling at peace with my circumstances and fully having faith that I’ll know when the time is right to move on to my next life activity, the truth is I’m unsettled by all of it and the basic question of how much longer I have haunts me every day.

I haven’t cried much since learning that my breast cancer returned, but the few times I do break down tend to be in the car driving to work.  I don’t know why that is.  It’s not like I’m sad to go to work or going to work reminds me of my situation.  Whatever the reason, on those days when I’ve had a tough drive in, I’ll park my car, sit there for a few minutes to compose myself and then march into work.  Once I step through the door to work I usually get inundated by some problem that’s come up or someone has a question about something, so my cancer is forgotten for at least the next few hours.  Problems such as finding a driver to go to Janesville become the most pressing thing on my agenda.  And this sums up what work is for me, a profitable distraction.

Costa Rica!

 

Last year I had the opportunity to visit Egypt for relatively low cost with my father and older son.  I can’t say it was a completely blissful trip without stress and inconvenience, but it was an amazing experience.  I will never forget arriving in the Sinai Peninsula in the dark, early hours of the morning and just being surrounded by sights that I had never seen before, mountains of rock, essentially; what I would imagine the terrain on another planet looks like.  Then, we got to our simple, tucked away hotel in the relaxed village of Dahab and I could see Saudi Arabia across the Red Sea as the sun rose in the sky.  The fact that my seven-year-old son was experiencing this with me made it so special.

The decision to take the trip to Egypt was sparked, in part, by the fact that I was a cancer survivor.  Sure, at the time I thought I was probably “cured”, and my son and I would have lots of time to enjoy trips together, but in the back of my mind, I knew there was a chance that my traveling days may be limited.  Four months later, when I found out the cancer was still very much alive in my body and spreading, I was so glad that I had taken the risk to travel to the Middle East with my son and I knew I needed to be aggressive about continuing to travel.  Thinking exotically and keeping my sons’ Spanish-based curriculum in mind, I originally wanted to go to Machu Picchu in Peru.  I really had my heart set on this trip with my husband and both of my children.  As I started planning, I realized a few things.  While I assumed flying to South America would be much easier and closer than the Middle East, turns out it really isn’t (I guess my perception of distances around the globe is a little off).  Tickets were a little pricey and any flights consisted of at least two stops, always flying overnight at some point.  The real problem with the plan, however, was Machu Picchu itself.  There was no easy way to get there…only another flight from Lima (which would have been at least another $500 for our family) or a 22-hour bus ride (retrospectively, now that I have seen my five-year-old on long flights, I think he would have handled this better than my husband and I, but it was a gamble I didn’t want to take).  So, basically Peru was out and I started brainstorming more reasonable ideas with my husband.  We thought about Mexico or Central America but ended up settling on Puerto Rico.  As I started looking at lodging in Puerto Rico, I realized that we could rent a big house for cheap and long story short, decided to invite our parents and siblings.  I’ll admit I was naive when inviting our extended family.  I just assumed if they didn’t want to go, they’d say no.  I realized later that when you have a terminal illness and ask someone to do something, they will generally feel like they have to agree to it.  So I’m not sure if it was really fair for me to so nonchalantly invite people on this expensive, time-consuming trip, but they said yes and I will forever be indebted to them for that.  Because there was an overall greater interest in Costa Rica than Puerto Rico, we ended up deciding on that as our destination and our group consisted of my family of four; my parents; my husband’s parents; my sister and her husband; and my husband’s sister, her husband, and their three children.

On to our trip.  I’m pretty sure every family member over the age of ten could write a minimum ten-page essay about our trip.  I know my kids, who are younger, have already given multiple people long-winded accounts of the trip.  Overall it was a really nice trip; but as with most things in life, the story lies in the drama, so I will focus on the unexpected adventures we had.  My main concerns going into the trip were that we were going to struggle deciding on activities and that people would get sick or injured.  I was also worried about getting around Costa Rica in general.  We had a large group and had heard a variety of suggestions in terms of where to stay and how to plan the trip.  For the most part, those things went well.  The real misadventure of the trip was something I’ll admit I was overconfident about, the airplane trip from Chicago to San Jose.  We booked the trip through an airline called Interjet.  It’s a cheaper airline (thus the reason we were able to get tickets for a comparable price to a domestic flight).  When booking I just assumed this was one of those no-frills, nickel-and-dime you for every add-on types of airlines.  This is actually not a minimalist airline, they offered us free drinks, meals, and baggage.  It is an airline that frequently cancels flights, however, and that is the issue we ran into.  We had a few obstacles against us from the start.  We ran into heavy traffic at O’Hare airport (Tuesday before Thanksgiving traffic) and one of the cars we were traveling in became the victim of a hit-and-run near the airport.  When we got to the airport we learned that our flight was delayed by a few hours.  It was scheduled to depart at 1:00 a.m., so none of us was too chipper at whatever stupid-o-clock in the morning it was by the time we actually took off, but I think we were all ready to power through it.  About two-and-a-half hours into the four-hour flight, the pilot faintly mumbled something over the intercom.  Due to extreme fog in our layover stop, Mexico City, we were going to land in Monterrey, Mexico.  We landed in Monterrey and waited.  And waited.  We had been sitting on the airplane for about an hour in Monterrey when someone finally told us it would probably be another two to three hours before we would proceed to Mexico City.  At this point, we were starting to break.  We had been either traveling in a car, sitting in an airport, or sitting on an airplane for at least twelve hours at that point.  It was apparent we were going to miss our next flight, and due to the extremely poor communication model of Interjet, we really had no idea what was going on.  We finally ended up getting to Mexico City, proceeded to wait on the runway another 30 minutes while the pilot tried to find a spot to park the airplane, waited another 30 minutes for a bus to transport us to the gate, then spent another 30 minutes crammed into a hot bus waiting for someone to let us into the airport (true story, people began banging on the windows of the bus to get out).

The next part of this story is still so frustrating to me that I struggle to write about it.  Basically, if I could rate the hospitality of the Mexico City airport on a scale of one to ten, it would be a zero.  Trying to get any help was like pulling teeth. To make matters worse, every person in our 13-person party had a different idea of where to go and who to talk to.  We were moving around in one big, discombobulated mob.  Everyone was melting down. People were starting to need bathroom breaks, we were all carrying heavy backpacks, we were all pretty much functioning on about one-and-a-half hours of sleep. It was about 1:00 p.m. and little did we know the extreme dysfunction of Interjet had yet to come to fruition. We booked the next available flight scheduled to leave at 7:00 p.m. that night. A long wait on very little sleep, yes, but we were all mustering the last of our willpower to get through it. At 4:00 p.m. we started to get antsy, wanted to get to the gate and find somewhere to unload our carry-on luggage. I guess in Mexico City they don’t actually give you the gate until one hour prior to take-off. So, what we got in the meantime was a “fake gate”. It went by a few different names. Some called it B, some called it G, some gave it a specific number “B27”. After an hour of wandering in different directions looking for B versus G, we finally figured out they were the same thing and it was not even the actual gate our plane would depart from. Okay, so one hour prior to departure we noticed that the “real gate” appeared on the screen and we made the trek to that gate. Things started to seem a little fishy about 30 minutes prior to take off. All of a sudden, the flight info disappeared from the board, no one else seemed to be gathering at the gate, and the flight attendant at the desk went missing. The gate had changed to another area about ½ mile away. So, we rushed to this new gate. There were many people here, the flight info was on the board, we saw the pilots and attendants do a lap around the waiting area. This had to be right, it was delayed of course, but we fully expected this. I went to the bathroom and when I came back my sister-in-law told me “It’s going to be okay, but this flight has been cancelled”. It’s after 7:00 p.m. at this point, some of us hadn’t seen any sleep for 36 hours. We knew we were going to have to spend the night in Mexico City and needed to get luggage and then re-book as soon as possible. We all started running around frantically. People were yelling at each other, relationships were tested. The check-in desk at Interjet was now mass chaos. I wish I had taken pictures of the massive number of people trying to reschedule flights. The next two hours were just sheer ugliness. We didn’t know what to do and it seemed we weren’t getting anywhere. No one knew where our luggage was. We were able to book a hotel, but at the time we thought it was off-property and didn’t want to split the group up, so we all just formed one big group of dysfunctional melt-down on the floor.  Finally, we were able to book a new flight two days later, not ideal, but it was something. We never were able to get our luggage. We were sent from corral to corral, Interjet employees would say they were working on it and then just disappear. We ended up checking into the hotel (which, pleasant surprise, was connected to the airport and very nice) at 10:00 and I think everyone just passed out at that point.

The next day, we woke up with renewed energy and resolution. The hotel offered free coffee and small baked goods. There was a pharmacy close by that I walked to and bought some prescriptions that were in our missing luggage (like most other countries, Mexican pharmacies sell most prescriptions over-the-counter…really a traveling pharmacist’s dream).  We thought we’d use the day to explore Mexico City.  The airport hotel (the true hero of this story) hooked us up with a driver and tour guide for the day. We explored some popular sites in Mexico City including the National Palace which was filled with beautiful paintings by Diego Rivera. This was Thanksgiving Day and we celebrated by eating a nice brunch downtown Mexico City. We then got back to the hotel and took advantage of some happy hour margaritas and appetizers. A few in our group had tried again to locate our luggage and again, failed. Other than that, I think we were all patting ourselves on the back for making the best of a bad situation. At the end of the day, my husband was checking his e-mail and noticed that we had been bumped up to an earlier flight that evening at 7:00 p.m. It was now 9:00 p.m., we missed it.  Interjet had somehow without any of us being there or agreeing to it, bumped up our flight to earlier that evening and of course we had missed it. My husband and I frantically ran to the Interjet counter, we just had to make sure we could still catch the flight we had been planning to take the next day. As it turned out, no, we could not still catch the flight for the next day. We would have to wait another three days for the next flight.  This was extremely irritating and obviously unacceptable, but the icing on the cake here was the Interjet customer service, which was by far the worst I have ever experienced.  We were never told what was going on, people would start to help us and then just walk away. I started yelling, my husband started recording the conversations, we just wanted to go with a different airline, but knew we would never get our money back and airfare for 13 people is a lot of money. We went back to the hotel dejected, told everyone the situation and went to bed. By some miracle, we did end up getting on the flight the next morning. I’m sure Interjet had another flight that missed its connection and thus had a bunch of openings for us. We made it to Costa Rica and unfortunately there was still no trace of our luggage. We had been without luggage for three days at that point, so it was pretty frustrating, but we were also happy to get to our destination.

I am happy to say the next four days in Costa Rica went pretty smooth and there were a lot of good memories that were made. Our first stop was near the Arenal Volcano, which was touristy but also beautiful. We were able to take some tours and saw a lot of beautiful scenery and some different wildlife.  Our second Costa Rican destination of the trip was on the coast of the Pacific Ocean, near the surfing town of Jaco.  Here we rented a house and again, this was another beautiful area of Costa Rica.  The combination of water, lush greenery, and mountains is always pleasant.  For the most part things went smoother than expected for the first few days near Jaco also.  We weren’t as close to the ocean as we had hoped and since the house was in a gated community I feel like we lost a little of the authenticity that we had at the other location, but the ocean was wonderful, we got fresh coconuts on the beach, and we did get to see the beautiful rainforests, beaches, and wildlife in Manuel Antonio National Park.

Aside from our flying issues getting down to Costa Rica, we experienced another unexpected misfortune the night before we were scheduled to fly out.  We got back from our day trip to the national park around 4:00 p.m., tired, hungry, and full of sweat and sand from hiking and swimming all day.  We got dropped off at the house and realized the power was out.  We were frustrated since we only had at most a couple hours of daylight left and had to cook supper, pack, and shower.  We contacted the house manager and she basically said “It happens”, blew us off and told us to wait it out.  It started to get dark and we started to really run into problems.  The house only had one poorly-working flashlight, the batteries on our cell phones were running low, and we were really having trouble doing the basic essentials of showering and cooking supper.  We started sending emergency messages to the house manager.  Finally she said she was working on getting us candles, but she lived “15 minutes away” …ummm, this was after we had contacted her two hours prior.  About two hours into the power outage, disaster struck.  My professional-chef brother-in-law had nicely been preparing all of our meals at the house.  He was trying to put something together for us to eat with the gas stove and oven (which we had established had some safety flaws).  The oven basically “blew up” at him burning his legs and part of his head.  His wife, my husband’s quick-thinking sister immediately shuttled him to the pool.  Then someone yelled, “the house is going to blow!” and all 15 of us ran out of the house in one big mob towards the pool.  At this point it was pitch black, we had a guy with burns of unknown severity in the pool, kids crying, and the rest of us wondering what had just happened and how were we ever going to get out of this mess.  After about 15 minutes, things calmed down.  The burns my brother-in-law experienced thankfully only seemed to be first degree—singeing his hair and causing tenderness in the affected areas, but not needing immediate emergency treatment.  The pressure build-up from the propane tank that caused this explosion had dissipated and slowly we returned to the dark house to continue supper.  Soon someone came with 18 narrow candles and a lighter.  These were the type of candles in Advent services at church and we had no way to keep these upright or hold them without being covered in hot wax, so really of very limited utility, but we made a few of them work and ate a spaghetti dinner by candlelight.  Finally, at about 8:00, the power returned.  Everyone cheered and started cleaning up after supper and packing.  Then, about 15 minutes later, the power went out again.  Everyone was separated and in the middle of performing some task in the pitch-black house.  I’m amazed someone didn’t trip or break something, but we were all able to huddle together until the power came back on for good about five minutes later.

Thankfully after this calamity, the rest of the trip and flight home was fairly uneventful.  When I first started thinking about this trip, I’ll admit I had panicky thoughts of worst-case scenarios.  I realized the trip might break us.  I had to come to the realization that maybe I didn’t really think this through when I invited people on this trip.  As I mentioned before, what if they really didn’t want to go, commit their vacation time, spend the money, but just felt pressured to say yes because I have a terminal illness?  Whatever the reservations may or may not have been by my family, I can honestly say every member of my family put their best foot forward and handled all of the obstacles we encountered with grace.  My husband’s parent’s vehicle was damaged on the way to the airport.  My sister-in-law’s purse was stolen at the Mexico City Airport (yet another stain to the reputation of the airport).  Between those issues and the time and money of the trip, everyone really sacrificed to make some great memories together and for that I will be eternally grateful.  As a blanket statement I would say cancer does not have a positive effect on most relationships, but for this seven-day adventure together, I can only say that I have a family full of love and support.

Pharmacy Life, Part 2

Pharmacy is an evolving profession and while I believe there are many pharmacists across the country who are working hard to dramatically change and improve the direction of pharmacy, I don’t like the public perception of where pharmacy is going, which seems to be robotics.  In school, one of my pharmacy rotations was a small, locally owned pharmacy in Madison that is of course, now out of business.  I found it so cool that at this pharmacy the pharmacist knew everyone who walked in the door.  All a person had to do was walk in the front door of this small pharmacy, take five steps to the counter and the pharmacist or technician had already pulled their prescription from the ready bin and was standing, ready to check this person out, answer their questions, and get them on their way.  This is part of the reason I went into pharmacy.  I either wanted to 1) do research for a drug company or 2) own my own little coffee shop/pharmacy.  To be fully transparent, there were two big problems with this small pharmacy I did my rotation at:  1) they weren’t getting enough people through the door to be profitable, especially as insurance companies kept scaling back on reimbursements and 2) they did mis-fill several prescriptions while I was there, mainly because they didn’t have scanning technology which is of course a big expense.  So, contrast this small pharmacy to where I worked at the time, a large retail store.  We had several repeat customers, for sure, that I (even being a casual, part-time employee) would recognize when they walked in.  But, for the most part no one really recognized anyone unless they were coming every other day (which, who wants to do that?) or a problem customer.  So, at my large store, you would have to walk past all of the food, toys, make-up (all things that are problematic to walk by with young children I might add), finally get to the back of the store, then wait in line, then wait 10 minutes while someone tried to figure out who you were (of course we always needed address confirmation, which offended plenty of people right off the back) and what was going on with your prescription (oh, it’s probably in the stack of 20 faxes that we’ve been getting all day, but haven’t gotten a chance to look at).  The pharmacist at these big stores, the person you are counting on to correctly check your medication, check your allergies, check for drug interactions (although, frankly so many people use multiple pharmacies that it’s only really a 50% check), check for appropriate refill history and any other items to do their job as a pharmacist is running around like a chicken with their head cut off trying to manage the technicians at different workstations within the pharmacy, data entry, filling, check-out, and the dreaded drive-thru.  As a parent, I love the drive-thru.  Pharmacists HATE the drive-thru.  I always found it interesting that as a pharmacist, I would make the same amount of money whether I worked in a store with a drive-thru or without a drive-thru.  Really, when I practiced in retail pharmacy years ago, half the problem was insurance.  “Umm, I need your insurance card” ….” Why would you need my insurance card!?!…. Here, take this” “Umm, that’s your library card”.  Not sure if it’s still such a problem, it probably is, but I find it ironic that in pharmacy school we prepped for all of these big, important research projects and conversations we would have with other professionals regarding the best therapies and in practice, we were really just insurance detectives and pill dispensers.

Back to my experiences as a patient, most of my prescriptions come from a mail-order pharmacy.  While I enjoy getting my prescriptions delivered to my front door, overall, I do not enjoy the mail-order experience.  Just for a quick example, today I received an automated call from the pharmacy stating that I needed to call them.  I’m sure anyone who’s dealt with any company over the phone can guess how the next 20 minutes went…. I called the number in the message…. automated system…” please listen carefully as our menu options may have changed” …. then about 10 minutes of menu options are listed before my option “oncology” comes up.  Finally, I get someone on the line.

“What can I help you with?”

“Well, I just got a message to call you”

“Okay, I’d be happy to help you with that” (WARNING…RED ALERT, these words actually mean this phone receptionist that you are talking to is not going to help you at all.  What will happen is that you’ll end up on the phone for a really long time, at some point resort to yelling, and then either get cut off or the conversation will end without any resolution).

“Okay, please give me your name, birth date, address, first-born child’s middle name, social security number, favorite teacher’s name” (okay, that might be a little bit of an exaggeration).

I give her my information.

“You need to give me your first name and zip code”

“ Oh, right I’m sure you have me mixed up with the other WARD on my street with my birth date…of course you need to my first name and zip code to clarify”

“Okay, I see you in the system, I’m not sure why you were told to call us, are you sure you are calling the right place?”

This is it, folks.  This happens all the time, it is so frustrating.  As a working mother who’s dealing with cancer, I feel like I have negative 2 hours to spare in a day, here I am monkeying around with a less-than-pleasant receptionist who just asked me why I was calling.  Every conversation I have with this mail order company goes like this.

There is another niche of pharmacy that I’m getting exposed to as a patient.  I now visit with a pharmacist who works with my oncology team periodically about my medications.  This is a relatively new thing at my clinic.  They obviously have always had a specialized pharmacist who checks and dispenses the chemotherapy that is administered at the clinic, but this is a more clinical type pharmacist who visited with me in person after an appointment a few months ago and periodically calls me to check in on my medications.  I like this guy (or it might be multiple people, honestly I’m not great at catching names when I talk to people on the phone) and he seems knowledgeable, but I get the feeling he’s still trying to find his place within the clinic.  Being a pharmacist, my perception of how helpful or necessary a pharmacist consult is to me is a little bit hard to judge.  My opinion based on my consults both in person and over the phone is that none of them were really necessary or helpful.  It felt like he just regurgitated information I had been told by a nurse or could read in one of the many informational hand-outs I’ve received.   I think that there is a good possibility that this is because either I am a pharmacist or because I haven’t (thankfully) experienced much in terms of adverse reactions to my medications.  Before I become the most hated pharmacist ever among my colleagues, I would like to add a few more comments.  I know for a fact that this pharmacist who is now a part of my health care team is incredibly intelligent and knows quite a bit about cancer medications.  While receiving one of my infusions one day, I overheard him discussing some nuances of some of the chemotherapy medications with the nurses.  He was giving high level advice to an audience that, quite frankly, already knows a lot about their drugs.  In summary, my experience with this oncology pharmacist was like many typical experiences I have had as a patient with pharmacists, I didn’t see his true knowledge in his interactions with me.  His vast knowledge of medications, interactions, dosages, etc. was not apparent when he simply read a 6th grade level handout to me.

I’ve thought a lot of about the combination of my frustrations with inefficiencies in the healthcare system and frustrations with the limitations of pharmacy practice.  My solution to these frustrations is that pharmacists need to be able to prescribe.  This isn’t a revolutionary idea.  I remember it being mentioned at the Minnesota School of Pharmacy in 2002 and it is already a practice in the VA system for chronic conditions such as diabetes, heart disease, and cancer.  I’m sure this is what pharmacy associations and schools have been and continue to strive for, I just think it needs to and can progress faster.  With all of the technology we have and advanced knowledge of pharmacy technicians, we almost have a scenario where a skilled pharmacy technician can run a pharmacy.  In Wisconsin, many, if not most pharmacies employ a tech-check-tech program where a technician actually does the final check of a drug product.  This is a very important job, a technician has to have a lot of experience and expertise to do this, so why not elevate this position and pay to give all technicians a realistic job ladder to climb and achieve.  We need to move pharmacists out of jobs that do not really require the full education and knowledge that a pharmacist has.

I understand at least some of the issues with introducing a pharmacist prescribing scenario to the healthcare team.  I am sure most prescribers have a particular regimen in mind when diagnosing a patient.  I can only imagine it would be difficult to give up that control.  Who would ultimately be responsible for the patient who is either misdiagnosed or mistreated?  I understand this would be an issue, but it seems like we are already moving to more and more collaborative relationships between providers with doctors, nurse practitioners, and physician assistants working together to increase access to care.  I imagine a pharmacist would enter the picture in the same way the nurse practitioner and physician assistant are under the umbrella of the physician.  I really envision that used efficiently, a pharmacist could take a significant amount of work off of the plate of my oncologist and free him up to take care of more patients.  In addition to medication selection and follow-up, pharmacists can easily order and evaluate lab values and interact with insurance companies when prior authorizations are needed.  Finally, I really believe that every healthcare team should employ a pharmacist that has the job of placing medications orders and following up with the patients and pharmacies to ensure medications were received and are being taken in a timely manner, keeping a clean and correct medication history, and serving as the patient’s number one resource for drug information.  This system we have today of haphazard communication between a patient, receptionist, nurse, doctor, insurance company, and pharmacy is not working and I believe pharmacists can play a crucial role in fixing it.

August 2018 Update

Good news today!  I got the results of a few scans and they both looked good.  The first scan was a follow up CT to assess how effective my radiation treatment was.  It’s still a little too soon to tell for sure due to tissue repair and scarring, but overall the results were favorable.  The area of my manubrium that was cancerous showed signs of healing and bone reconstruction, indicating cancer cells have been successfully killed off during radiation.  The lymph nodes that were also part of my radiation treatment look much better.  It’s still too early to tell what, if anything, will still be visible on scans in a few months.  Even if nothing showed up on scans, it would still be assumed that there are a few rogue cancer cells floating around, so my other treatments will continue.  The other great news with this scan is that everything else looked good; bones, lungs, and liver looked good.

Aside from the CT scan, I also had a MRI of my brain a few days ago.  This was actually my major concern going into my appointment.  About a week ago I developed constant shooting pains on the left side of my head.  This was accompanied by some minor numbness also on the left side of my face.  When this didn’t go away after a few days, I became really worried and we got the MRI scheduled.  I thought for sure the cancer had moved to my brain.  I have no history of headaches, migraines, or really any pain, so I knew something was not right.  I have never had a scan that was good.  Scans have always brought bad news in the past, so I was mentally preparing myself for a worst-case scenario.  I began thinking about the next steps…brain surgery, whole brain radiation, quitting my job, cancelling my trips…it’s been a rough week.  The other possibilities I had thought of were an infection or blood clot, neither of which were appealing alternatives, but better than a tumor.  As it turns out, the MRI didn’t show anything, which is great news!  The thought is that I may have trigeminal neuralgia, a neuropathic pain condition that affects the cranial nerves.  Since the pain is essentially wiped out for eight hours with ibuprofen, this is way better news than anything I was thinking.

I’ve learned and been reminded of two things this week.  First, MRIs are crazy!  Not sure if this applies to all MRIs or just ones of your head, but the noises are the most nonsensical thing I’ve ever heard!  It’s like they gave a two year old his first band kit and told him to start playing the random instruments behind your head at full blast or some guy is just pressing sound effect buttons and laughing at you from another room.  There is no pattern to it, it’s just weird sounds…so random.  Second, cancer can be a really up and down experience.  I’ve been reading a couple other cancer stories this week (I’ve read two, now I’m an expert) and I’m always struck by how things change so quickly.  I went from thinking I had reached the end of the road this morning to thinking I’m the healthiest woman alive tonight.  You never know what the next day will bring.  Prepare for tomorrow, but live for today..always.

Pharmacy Life, Part 1

I have many, many thoughts about the practice of pharmacy.  Given my background in pharmacy, my experiences as a patient are really frustrating and thought-provoking for me.  I could really drone on and on haphazardly about this subject.  I feel I should spare people a long, drawn-out discourse, but I do have a lot to say, so I’m going to try to divide this subject into three parts, the first being general background about my career and the current state of my medication regimen, the second being my experiences as a pharmacist and patient, and the third being ideas for where the profession of pharmacy and drug development needs to go.  I apologize if this gets a little detailed and long, especially for those people that are not 1) pharmacists, 2) patients with experience getting medications, or 3) interested in my personal frustrations.

First, some background information about me.  I have practiced pharmacy for twelve years.  While I have experience in retail pharmacy as a technician, intern, and pharmacist, most of my experience has been as a nuclear pharmacist.  I make radioactive drugs that are used primarily in medical imaging.  I have two side notes regarding nuclear pharmacy before I move on.  I don’t usually address this because I feel like people generally have their preconceived notions and my words won’t change anything, but my occupational exposure to radiation definitely did not cause my cancer.  In my 11 ½ years working with radiation, I have received far less exposure than I just received in the past 6 months with CT scans, like multitudes less.  I have been able to work through two pregnancies with minimal job restrictions and this says a lot because the radiation limits for a fetus are extremely low.  Second, just an interesting side note, I have received and will continue to receive some of the nuclear medicine products that are produced in nuclear pharmacies to help image cancer, so I guess my career is finally coming full circle.

This is embarrassing to admit, but I didn’t do any research about my current drug regimen.  There are many reasons for this which I won’t get into.  I checked a few things off my list mentally, then decided I was comfortable with the regimen.  Here is a quick summary of my drug regimen:  since my type of cancer is fueled by estrogen, I’m on a few medications to stop the production of estrogen from my ovaries (so I am menopausal…estrogen-free) and block the effects of estrogen in my body.  I’m also on a drug used for osteoporosis to help strengthen my bones.  Finally, I’m on a newer medication that blocks cell division through a pathway that was found to be up-regulated, or more prevalent, in my type of cancer cells.

Everything made sense to me, both biochemically and from a quick search on breastcancer.org (this is my go-to website that I use to get a quick overview of what the current recommendations are and what other people are doing), so I moved on and didn’t really put any more thought into my regimen.  A few things have happened recently that have struck a negative cord in me about one of the drugs.  Full disclaimer, I’m writing this from the emotional standpoint of a patient.  This is not a professional research article.  If you or someone you know is taking this drug, please do not take this information as a reason to discontinue.  The drug is palbociclib, or Ibrance® and was approved by the FDA in 2015 for estrogen-receptor positive, metastatic breast cancer, like mine.  I could tell from the start that this was a special drug.  I had to get it from my super-annoying specialty pharmacy (this will be touched on in my next post). IMG_2712 (1)

The company that makes Ibrance®, Pfizer, sent me “care packages” on 2 separate occasions (the picture shown here…same exact package, sent to me twice), so they seem to be heavily invested in marketing this drug.  In addition to all of the people at my oncologist’s office and the pharmacy I have talked to about this drug, Pfizer had yet another person reach out to me wanting to discuss this drug with me.  So, I was already getting slightly annoyed by all of the fanfare associated with this drug, when I became the victim of…I don’t know what…a conglomeration of miscommunications within the office of my oncologist that has resulted in lots of my time wasted getting lab work done and discussing lab results.  One major side effect of Ibrance® is decreased white blood cell counts and decreased ability to fight infection.  My oncologist’s office seems to have no idea what the recommended protocol is for drawing labs to monitor these white cell counts.  The frustrating part is that there is indeed, a protocol, because different people within the office have referenced this protocol, they just all seem to be looking at slightly different information, because between the oncologist, the nurse practitioner, the nurse, and the pharmacist, I have gotten different directions of when to get my labs drawn.  This has resulted in several situations where labs were drawn unnecessarily or I went to get labs drawn, only to find out there was no order for the labs.  I feel like this is a situation where my oncologist could have just said, “Okay, I know you passed third grade and are competent enough to raise children.  Why don’t I just give you the information up front…get your lab work done at day 15 and day 27 of the 28-day cycle for the first 2 cycles.  I’ll just put in a standing order for these labs and you figure it out.”  But, honestly as much as I like my oncologist and healthcare team, I’ve seen them stumble around on their computers enough trying to put a simple lab order or prescription in, that I understand why this didn’t happen.  Also, I think part of the confusion is due to this simply being a relatively new drug and everyone is still trying to get used to it.

In the big picture of things, this is not really a big deal, just annoying; however, in the midst of all of this chaos I noticed an advertisement for Ibrance® (again, really embarrassing that I’ve resorted to getting my drug information from advertisements).  The advertisement clearly said “does not increase overall survival”.  My reaction was immediate and dramatic.  I have a terminal illness…I’m not taking this drug to feel better, I want to live longer.  Isn’t that the point of my treatments?  You’re telling me that I would live the same amount of time whether or not I’m on this drug?  Aahhh!  I was so frustrated!  So, I decided it was time to do a little research.  Basically, in my 10-minute Google search, I discovered that while Ibrance® does significantly increase progression-free survival, relatively new data failed to show a difference in overall survival…. the numbers for overall survival were 34 months without Ibrance® versus 37 months with Ibrance®, which was not statistically significant.  I also discovered in my search that this drug is listed at $10,000/month.  Yikes!  So, let’s say I live the average 37 months while taking this drug…that’s $370,000 to live an extra 3 months (and that’s not even a statistically significant number…you can’t even quote that 3 months with any confidence).  I have young kids that I want to see grow up as much as possible.  Every minute counts.  But, I would honestly never pay that amount to live an extra three months.

As a pharmacist and as a cancer patient, I’m all for new drugs and drug research.  That being said, I feel as a society with ever-increasing health care costs, we need to take a step back and evaluate what we’re doing.  I’m extremely frustrated by all of this…the “care packages” Pfizer sends as marketing; all of the personnel I have to talk to about this drug, none of whom are of any practical assistance to me; the fact that no one seems to question the cost of the medication or even bring it up to me as a patient (with insurance and discount programs, I don’t pay a dime for this); and mostly the fact that it appears my life expectancy is a short 37 months, based on my quick glimpse of the clinical trial results.  This concept of throwing all of this money at end-of-life measures to maybe increase your life by a few months is the exact opposite of everything I think we should be doing in healthcare.  The only potential positives of this for society that I can think of are 1) maybe this is a stepping stone to a really improved therapy that will extend lives dramatically and 2) maybe this is necessary step that needs to occur before a cheaper, more streamlined production method is developed to make this drug cheaper and more accessible.  The only potential positive I can think of for myself, personally, is that maybe my cancer cells are particularly sensitive to Ibrance® and possibly I would be on the far right side of the bell curve in terms of survival benefit.  It seems like we’re grasping at straws.  I don’t want to sound like I’m just giving up the fight, but I’m really on the fence about continuing on this medication.  From the data at hand, it seems like Ibrance® is a drug without any proven survival benefit that is being oversold to a desperate population.  I realize this might be a harsh overreaction, I’m guessing a more definitive survival benefit may become apparent as more people die (morbid I know, but that’s how you’re going to get to statistical significance).  I think the point is that this is a costly drug that is not without side effects and the need to continue warrants a discussion with my oncologist

Keeping the faith

I am a Christian.  I believe that Jesus Christ died for my sins and has called me to spend eternal life with Him after this life ends.  I’m really glad I am a Christian and my children are growing up in a Christian household.  I believe without a doubt that I am going to a better place.  This world can be so hard to live in.  You don’t have to be struggling with a terminal illness to have daily demons that attack you and bring you down.  Christianity has in many ways saved me from those demons.  I trust in God.  I trust that He will save my children from the pitfalls of this world and provide a “Peace that surpasses understanding” to them as He has with me.

I feel like the sad reality of the world today is that I’m probably going to offend Christians and non-Christians alike with this blog post.  We’re dividing ourselves into tribes like never before, constantly drawing lines in the sand.  “You support government social programs…you’re not a Christian”, or the opposite, “You don’t support government run healthcare…. you’re an ignorant hillbilly”.  I feel like as Christians we need to be mindful of balancing our convictions with spreading the Gospel.  I’m a Lutheran.  Lutherans tend to fall more in line with acceptance and can at times give the appearance of letting our convictions take a back seat.  I believe convictions are important to any religion.  If you don’t have certain rules or guidance that you follow, why even subscribe to a religion, why not just meditate or think positive thoughts.  I think it is our duty as Christians to spread the good news of the Gospel, but I also believe that I will never be successful doing that through discriminating behaviors.  We all need to recognize that we are not comfortable around those that are different than us, be it their looks, culture, or lifestyle.  I’ve seen and experienced some pretty unforgiving treatment because of someone’s interpretation of “Biblical behavior” and it’s not only not fair, but also based in fear and prejudice.  When our first impressions as Christians are those of immediate judgement and arrogance, we should expect to be met with hostility.  I saw a quote that I really liked and unfortunately have lost it, so cannot give the appropriate credit or probably even correctly quote it, but it was something to the effect of “Don’t tell a person why they should be a Christian, behave in a way that makes them question why they are not a Christian”.  I know it’s a basic life lesson and everyone already knows this, but actions speak louder than words.  I believe Christianity is the one and only way to receive the gift of eternal life through Jesus Christ and it is my job to tell others; but no one will listen to a jerk, plain and simple.  Every religion has great people, every religion has not-so-great people.  If you are going to be a jerk and pass judgement on others while doing it in the name of your religion, you’ve just lost so many people.  Power lies with your actions.  Show God’s love and mercy first, then do your preaching and support your convictions with the Bible.

I have had a few struggles with my faith over the years.  First and foremost, I was born into spiritual privilege.  My parents were very involved in the church and it was always a comfort zone for me.  I’ve always wondered whether I would be a Christian had I been raised by a different family or been born in a different country.  What about people who have just never been exposed to Christianity?  How is it fair that they will not have eternal life?  I have always felt guilty for wondering these things, like my faith wasn’t strong enough.  I now have children who will probably start asking these same questions.  I want them to question why they believe what they believe.  I’ve come to realize, doubt is not a sin, it’s the catalyst that spurs a stronger faith.  The guilt you may feel because of doubt, however, is not coming from God.  Guilt comes from a dark place and that’s not God’s plan, that’s evil trying to disguise itself as religion.  Back to my original question, I believe my life was the path God chose for me.  Why I seem to have kind of “gotten off easy” and was born into my current faith with an easier, somewhat passive path, I don’t know, but it was absolutely God’s plan and in many ways a gift from God that I should be thanking Him for every day.

The other sticky point I’ve had throughout the years that I still struggle with is when I observe non-Christians behaving in noble, altruistic ways and then I observe Christians doing absolutely terrible things.  This is difficult for me and I pray that the exposure my children get to these contradictory behaviors will be minimal at least until they are older.  As Christians, the world is looking at our actions and treatment of people under a microscope.  We have a great responsibility to serve as ambassadors of Christianity and demonstrate kindness and generosity to everyone, every day.  We must remember that and again I pray that with God’s help we are able to do this.

Another struggle I’ve had is pretty minor, but it is a real thing and I think it’s an issue that comes up for a lot of Christians.  Being a more reserved person, I don’t enjoy or feel completely comfortable with a lot of typical Christian activities.  I don’t like singing.  I’m actually so musically handicapped that I struggle to clap to a beat.  I’ve never enjoyed Bible camp.  This also caused me some guilt in high school and college when I would observe my friends really in their element at camp and I just dreaded it.  I didn’t like feeling like I was being shuttled around from one activity to another and the sad thing is that again, I think the guilt and my over-thinking the situation actually prevented me from experiencing some of the great strides in faith that my friends made.  Finally, I’m absolutely not someone who is convinced in an argument where I feel like I’m being sold something by the loudest voice in the room.  This seems to work for some people, so it’s used as a technique by many preachers, in a variety of religions and social settings.  Last summer I was listening to an author speaking at a church who, in addition to trying to sell his book, was trying to make a point with numbers.  At one point, I can’t remember what he was talking about, but he shouted something to the effect, “You’ll never guess the number (pause for dramatic effect) ….1000!  Repeat that after me, 1000”.  So, everyone repeated the number after him.  The minute you ask a congregation to repeat what you just said, my ears are shut.  I just don’t relate to that, it’s not in my nature.  Aside from that, I remember it not being that mathematically incredible.  I definitely wasn’t knocked off my seat.   The whole thing was just frustrating.  I think it’s important to show excitement for being a Christian, but I’m realizing it’s okay to just sit back and let things come naturally sometimes.  I don’t have to shout “Amen!” or wave my hands in the air to feel connected to God.  I’ve definitely felt God’s presence and love the upbeat excitement I get from listening to a good Christian song on the radio.  I’m also not denying that sometimes you need to force things and leave your comfort zone to get to new places.  I’m just more at peace with some of the nuances of my behaviors and motivations and have come to more of an acceptance with who I am, who my kids are, and what kinds of things our personalities need spiritually.

I have thought about death.  It is not pleasant.  I have a really great life here on Earth, way better than I would have ever imagined.  I can’t believe God has blessed me with a great husband, loving children, and a job I enjoy (I’ll admit that gratitude is hard to come by when I go into work at 1:00 a.m.).  I just want to latch on to this life and never let go.   Once I was diagnosed with cancer, I really started to think about death.  It became real, not just going to someone’s funeral.   I won’t lie, it is really sad to think about myself or anyone I love dying, but I’m not afraid.  That’s a pretty heavy statement, I’m not afraid of death.  That’s not being strong, that’s being a Christian.